What I think when the Gibbons are not whispering in my ear!
Thursday, April 24th, 2008
When I have the chance and the money I also like to go to the Smokies National Park if possible. There is so much to see and do there. I have read that they have 800 miles of trails in the park. I, of course, am lucky to hike half a mile. But I still try my best and do what I can.
I have also enjoyed the Smoky Mountain Knife Works a great deal. It is on the way to the park via Sevierville exit 407 for those of you wanting to visit. I have never seen so many sharp things in all my life. Hunting knives, kitchen knives and some that can only be described as "fantasy blades". I have purchased a few inexpensive items myself. Hey, I walk with a stick and move slow. A little sharp protection is a good idea.
In truth I mostly use my sharp blades to cut open my snacks before the dialysis session. But I feel more protected and that is all that matters. I think the biggest knife I bought has to be the "Jungle Master". Clearly not the sort of thing you want to walk into a fast food place or common store with but it has that size and scary factor. And hey... for the price I could not pass it by. Trust me when I say if you go there you will purchase *something* before you leave. I have yet to see anyone get out without something. Can we all say "fantastic prices"?
Dialysis has been stable and boring which is good. Only PTH level is out of whack. My doctor will not believe me but the more Sensipar I take, the more it goes up. He says that is not possible but I see it happening. Numbers do not lie. Or do they? Maybe but I am confused. Of course the medical team wants me to have the offending glands removed but they seem to want to cut, burn or poison anything that bothers them. I am not so delighted with this idea and I am putting it all off. I think I want a second opinion first.
Gas prices are killing me and all the rest of the people in America. I am not sure what to do about it. I have to go to the clinic 3 times a week no matter what. Perhaps the idea of getting an apartment closer is a good idea? I do not know. Living here is so handy to do things and have room to walk and work on stuff. And how I hate riding the CAC bus! Man those drivers are scary in their inability to drive well. I am greatly surprised that they do not crash more often. Hard to know what to do as a gallon of gas heads towards $5.00. I have no doubt it will get there before the summer is over. Hard times.
I saw a news report today that told about rice being rationed here in America. All over the world it is being rationed and food staples in general are in scarce supply. I keep getting the feeling that most of this situation is being built up by the media and a lot of the people that run the world. Scarce food keeps the people focused on other matters. It is a good ploy. I no longer doubt that there are factions on this planet that want to run everything. Only the fact that they have some competition from other factions has kept the situation from being a total Socialist world. Ironically the other side appears to want something more akin to Fascist rule. I think freedom and personal safety on this planet are going to go away in the next 2 decades... if it takes that long.
I guess I will not be in the game for too much longer so I can watch with some concern but overall I am rather a pawn now anyhow. Once you need the machine to live or the drugs to keep a replacement organ you become a puppet of the medical people. There is no way to break free for long. Oh well.. I do what I can...
Thursday, April 10th, 2008
Most mornings I awake with a terrible feeling that reminds me of the few times I have been hung-over. Who knew? I generally deal with it as best I can, but it really is all about the side effects of the many pills I take. Even as I write this paragraph I feel like I need to make an offering to the Porcelain god. I hate Sensipar and all the side effects. It seems so unfair that a pill so small should be so costly and be so terrible on the innocent host.
On a lighter note: Today was almost perfect in the weather department. I spent a couple of hours outside cleaning up the remnants of last years gardening efforts. It looks nicer and I think a big mound of flowers will look good out in front of the house instead of stumps. Ironically those few stumps attract stump grinders like flies on honey. A never ending flow of them come to the door and ring the bell. Then the dog goes crazy and it gets to be mayhem around he door. All for the sake of some fool and his grinding machine.
Flowers will be nicer and easier. And once I am done
outside I can come in and focus on the shop area. It really need some
help. I really want to get going again in there. It is now or
never. Hope I am up to the challenge.
Sunday, March 16th, 2008
On that note: I have decided
not to have a garden this year. It is too expensive and too much
work. For the same money I can go to the Farmer's market or the store and
buy all the veggies I desire. I am saddened by this situation but I have
to be practical and realize that my energy and my money only go so far.
On that note: I have decided not to have a garden this year. It is too expensive and too much work. For the same money I can go to the Farmer's market or the store and buy all the veggies I desire. I am saddened by this situation but I have to be practical and realize that my energy and my money only go so far.
Thursday, February 28th, 2008
I am still
wishing for spring and some warmer days. I hurt a lot on the cold and gray
days when the nasty weather comes along. My kidney doctor wants me to have
my ParaThyroid Glands removed via surgery and I told him no way. My
calcium levels are a problem but I need time to work on it. Cutting things
is not always the best answer for life. Another surgeon wants to
do things to my left knee just to look around and decide what needs to be
done. I am not so sure about all that either. Everybody wants to cut
me! Geez.. I know that all the medical people see me as a cash cow
but I was hoping that I would not be cash steaks before I died. It really is
bizarre the money they make dealing with me. Over $1500 for an MRI of my
left knee. It took 20 minutes. You do the math. They make this kind
of money all the time and I have trouble buying snacks each month. Hmm. Mostly
around here I think my life has degraded into piles. I have piles of stuff
all over that I mean to pickup or deal with in some manner. Yep.. piles of
stuff. Important stuff but just not important enough to sort yet. Also
trying to pick a place to live. I can now get an apartment for about 30%
of my current income with utilities and all that paid for as well. I just
need to find a place that is located well in the city. I don't have a car
yet so I need to be able to get to things easily. Then I will be in a
smallish white box with even less furniture, eh? Wonderful. Yeah.. I am
bummed. I did discover the joy of ordering pizza via the Web today.
Domino's has a delightful web site to order your perfect pizza and even has a
tracker to watch as your pizza is made and delivered. The delivery man was
dressed like he was homeless but the pizza and process was delightful.
What is the deal with people anymore? Do they not understand that bathing
and looking nice is a great way to impress people? Perhaps they no longer
care. Wow... that is going to be a bummer in the years to come as I
tolerate the dumpy looks of all the young people in America. LOL.. I sound
so Republican! Ugh.
I am still wishing for spring and some warmer days. I hurt a lot on the cold and gray days when the nasty weather comes along. My kidney doctor wants me to have my ParaThyroid Glands removed via surgery and I told him no way. My calcium levels are a problem but I need time to work on it. Cutting things is not always the best answer for life.
Another surgeon wants to do things to my left knee just to look around and decide what needs to be done. I am not so sure about all that either. Everybody wants to cut me! Geez.. I know that all the medical people see me as a cash cow but I was hoping that I would not be cash steaks before I died.
It really is bizarre the money they make dealing with me. Over $1500 for an MRI of my left knee. It took 20 minutes. You do the math. They make this kind of money all the time and I have trouble buying snacks each month. Hmm.
Mostly around here I think my life has degraded into piles. I have piles of stuff all over that I mean to pickup or deal with in some manner. Yep.. piles of stuff. Important stuff but just not important enough to sort yet.
Also trying to pick a place to live. I can now get an apartment for about 30% of my current income with utilities and all that paid for as well. I just need to find a place that is located well in the city. I don't have a car yet so I need to be able to get to things easily. Then I will be in a smallish white box with even less furniture, eh?
Wonderful. Yeah.. I am bummed.
I did discover the joy of ordering pizza via the Web today. Domino's has a delightful web site to order your perfect pizza and even has a tracker to watch as your pizza is made and delivered. The delivery man was dressed like he was homeless but the pizza and process was delightful. What is the deal with people anymore? Do they not understand that bathing and looking nice is a great way to impress people? Perhaps they no longer care. Wow... that is going to be a bummer in the years to come as I tolerate the dumpy looks of all the young people in America. LOL.. I sound so Republican! Ugh.
Tuesday, January 1st, 2008
have been having a hard time with my PTH levels. If I cannot get them
under control I am going to end up having to have surgery to get things
removed. Ugh.. not a happy deal. We shall see. Having failed
kidneys is not an easy deal I can assure you.
I have been having a hard time with my PTH levels. If I cannot get them under control I am going to end up having to have surgery to get things removed. Ugh.. not a happy deal. We shall see. Having failed kidneys is not an easy deal I can assure you.
Wednesday, December 26th, 2007
It seems amazing to me that the entire country looks to this period of time as a way to make or break their business. Most do though.. go figure. Imagine having a business that could only survive by doing well at this time of year. Not me. I want to have a business that lives well all year long.
Anyhow.. it is all over for now. Yes!
Wednesday, December 12th, 2007
Today itself was a wonderful day but for other reasons. Sandy and I worked out a car-pool arrangement that allows me to no longer ride the CAC bus. Today was the first day of that arrangement. No bus, no stress, no lateness, no idiot drivers which includes no speeding. I was almost to my wits end quite honestly. I have not been comfortable riding the bus of late because of the tension I felt each time. Tension which is rooted in that terrible day in October when my bus was in an accident. Since that time it has been a real challenge to ride the CAC bus to and from the clinic.
Call it what you will I was stressing big time. Now I get to ride in comfort and safety and be on time too. I never dreamed that the worst part of being on dialysis would be the transportation. That simply is too illogical to grasp. But, alas, it is true. Now I just feel bad for all the other people that still have to ride the damn thing. So much misery from one issue.
Overall life is pretty good. I certainly ache a lot in the cold and damp weather. I can see that winter is going to be tough as the years go past. And it has become so very clear that nobody (my doctors) gives a crap about anything regarding my pain. They are all so involved in the money games there is little time left for real medicine. You can tell this when the doctor comes to visit you at the clinic 2 or 3 times in the same week. Must be going on vacation so there will be no visits later on. What a joke.
Blood levels are good though and all the rest seems okay. I finally got my new bank account setup and running so I can deal with things better there. Now if I only had some money to put in it! LOL. Money is always a challenge when a person is on dialysis. This will become really clear in a few weeks when the Medicare Part D system reboots for the new year. Brace yourself... it will be rocky for sure.
I wish I could think of something pithy to write but my life has been pretty slow and really quiet of late. Not much happening. I go back and forth to dialysis and I eat and sleep. Watch some TV, do stuff on the computer... repeat! I know.. not what you call exciting. Perhaps once the holidays pass things will calm down and life can once again go forward.
Sometimes I really question American life. People wait for the holidays. Then they moan about the new year. Then they dread spring and tax time and all the work. Summer is stressful due to more vacations and all that hoopla. Then people worry over school and then boom.. back to the holidays. Talk about a circle of boredom. I think living your life for a purpose other than holidays and time off from work might be a nice change. Whatever happened to productive work in America? Oh well.. that is a rant all of its own.
Maybe next time?
Tuesday, November 27th, 2007
I have tried to find somebody to talk to online but it seems for all the millions of people online at any given moment none of them are on my lists. Not a soul. That's just wrong. Pretty soon I will be reduced to watching TV online just to have noise around me.
I did find a couple of neat things online. One of them is Pandora. It is a radio station that learns what you like. Once it knows you can listen for a long time before you hear anything you do not like. Ironically it matches style so you might not hear things you know but the overall style is the same.
Another interesting web site is Plenty of Fish. POF is a dating site at it's heart, but it also has selectors for just finding friends and activity partners. Of course it is free and that is the best part. My goal is to find people to chat with and maybe even go do some things in the real world. I know there must be other people out there with time to burn and wanting to do something now and then. Heck, even just to go to the mall and eat Taco Bell!. I get bored so I know others do too.
Honestly it is really hard to meet people in my world. At the clinic there are nurses and EMT's coming and going but do you ever really know if they are just being polite or do they like you? And do I really want to spend even more time with them than I do?! Outside of that there is little contact save grocery stores and whatnot. I have thought about trying to go places just to meet people but they often shy away from me. Okay I get that because I walk around with a really large bamboo stick. It helps me keep my balance but causes some odd reactions for sure.
It has also been very hard because once you meet people you have to deal with the going places and doing things aspect. Knoxville is not the jewel of the south in terms of entertainment. And all of it costs money. Right now I am having trouble just keeping up with my medicines and Humana payments. Oh yeah.. being on disability checks is great so you can play and never work again... NOT! I would trade working in a heartbeat. What I need is something I can do to earn a little money that is not too hard on me. So far I have not found that job. And of course I would have to discuss the entire thing with Social Security. They have rather strict rules about all that.
Sigh... might be time to consider taking something to improve my mood. My chemical imbalances are taking a toll on me. And I eat what I should but sometimes things just go the wrong way. Amazing the effect that rogue calcium has on the body. Naturally the pill that helps that makes you want to puke. Of course.
So for anyone reading this blog... if you have some ideas of things to do please e-mail me and if you want to go with me to do them be sure to e-mail for that too. I could use the company!
Thursday, November 22nd, 2007 - Thanksgiving Day
The most notable thing is that I still seem to have that strange cold. It is mild and more a sniffle than a real cold but it is still hanging on. I would be really concerned but all the other people in my world seem to have it to and cannot get rid of it either. Not sure what is going on around here but I think the entire city is sick to some degree. I have never seen so many people sniffling and coughing all the time. Weird.. kind scary. Can you say "pandemic"? I know I am able and wondering if the government should be telling us something. So I am *still* taking Benedryl and still feeling tired all the time. Welcome to my world.
On October 24th I was in a CAC bus accident. Yes, it finally happened and not even 10 minutes after I sent a text message to Sandy telling her that I thought I might die soon because the driver was speeding in the rain that day. It was about the 3rd day of rain and everything was damp and slick. Sure enough a few minutes later on a small side street we crunched into the side of a small car that missed the stop sign at an intersection.
The bus was still going at a pretty good clip and the car lost the battle for sure. The phrase is "T-Bone" and the result was we slid off into the side of the street, hit a power pole, then a tree and finally a small rock wall that crumbled into bits. Thankfully all the rain helped to make everything softer but the bus still was trashed across the front and side. Ironically I expected all this and had braced myself and placed my sleeping bag roll in front of me. I got a bit bruised but I walked away from it all. In fact I went on to the clinic after they determined I was not harmed in any major way.
I complain a lot about CAC but in truth they hire low end people and they are poorly trained as drivers. And the worst part is that because we cannot change to another service we are just stuck with it all. And there is no way right now that I can afford to buy a used car. I wish I could because things like this are stressful to the max.
Most unfair in this dilemma is that the driver will probably never return to this job because she was really freaked out. I, on the other hand, have no choice and have to ride the bus to the clinic or die. In truth I am surprised it took this long to have the accident. I figured it would happen much sooner and now I am beginning to think that in all likelihood that I will die in a way that has nothing to do with PKD. Think about that one for a bit. Clearly it is time for me to see a shrink.
I have put off that move for a long time. Now I think the stress in my life is enough to try it. My concern was that I did not want someone else trying to convince me that I would be fine if I just pretend that my life is okay. My life is NOT okay and what I need is less people talking to me and more people helping me in a meaningful way. Or... just for kicks.. maybe all the altruists could just leave me alone for a good long time since they never do anything I need. Whoever decided that "talking out" things was a way to make up for real actions was a moron.
On a different note: Amanda has gotten a job at a local grocery store. I only mention this because it means that I have days when I am home all alone. Not used to that idea but I am beginning to like it. Silence can be a wonderful thing. And she seems to really like the money too. The down side for her is that she is learning how shitty the world of working can be. Of course the petty tyrants of the retail food chain are doing all they can to be as harsh as possible. I think some people just need to dump on others. It is their only joy since they live in that crappy reality too.
I have no doubt this is just a minor stop for Amanda. These experiences will be nothing more than a creative stop used to feed her efforts at writing. Right now she is exhausted from the long hours but loving the power of the money. I only wish that her world was going to be one of pure capitalism, but it will not. I have to admit I am saddened by the idea that I will never live to see a pure capitalistic world. It would such a beautiful thing.
My health has been up and down. First the cold then I have had nausea issues. Then the bus accident and weeks of visits to the chiropractor. Ironically riding the bus twice each day to get there. My PTH level has been higher than the medical team likes too. In normal peoples terms that means that my bones are slowly dissolving into my blood stream because my kidneys are no longer regulating the levels of blood calcium and phosphorus. My joints hurt all the time and I have some trouble walking on rainy and cold days.
Dialysis is a treatment. Kidney transplant is a treatment. One has to constantly remember that. Many people I meet that are also ill with ESRD seem to act like this is a cure and things will be fine again. I see this as I am dead already and this treatment is simply allowing me to walk around and enjoy life a little longer. All modern medicine is about giving us more time. Until we can invent immortality it will always be that way. I wish it was not so. I wish there was a cure for what ails me. Alas there is not and I am damn lucky there is even a treatment. 35 years ago there was no dialysis. My father was able to extend his life because of dialysis but his mother was not and died from it all.
This brings a person to the real issue here: death. I have had to deal with that fact since I found out that my kidneys had stopped working. Any person that is really ill knows what I mean. It is always there in your thoughts. It never leaves you and it changes the way you live and act. A life can seem endless until you learn that yours is not and has an expiration date after all. Of course without death humans would not have much of what we do because there would be no motivation to create and do. I think it is death that reminds us that life is very important and should be lived as well as we can.
I read a lot about death and try to understand it from many cultures and many directions. It is one of the things all humans share. Death, love, life, eating, sleeping, etc. Common things for all humans since the beginning. Every human is in a race with death. To achieve and create before it is all over. Most people want to do something that matters for longer than the life they lead. Something immortal even if they cannot be.
I talk to a lot of people online. The majority would call themselves Christians simply because I live in the USA I think. But I do speak to others with other cultural beliefs. There are a lot of ideas about life and death, but I am so often perplexed by the Christians. I always wonder why they fight and struggle so hard when each of them believes there is a god and a heaven to go to after death. As an atheist one would expect me to try almost anything to live longer because I expect that after I die... I am dead. Poof! That's it. They on the other hand seem a paradox to me. If I had all that cool stuff waiting for me I would be excited to die and go there. So much better than the pain and crap I deal with here. Muslims are the same... lots of rewards.
Yet they seem to be as intense as I am about dying. Seems odd. Perhaps they do not believe all the fairy tales after all? Must be something going on. If anyone knows why please write to me and explain it. I would like to know why I am competing for medical resources with people that should be happy to die and move on.
As a final thought for this entry I have to say that dealing with impending death is very hard. Normal moral codes fall apart. Normal ideas about life fall down too. In fact there is little that matters to a person anymore after the final notice is delivered. I am grateful to modern science that I have more time to live, but it is so hard to know what to do with it. There is a terrible urgency to do all the things I missed. Perhaps that is the lesson after all? Death teaches us to live well and get things done before it comes to call. Life is about living and anyone and anything that does not allow us to live and love and be is evil.
How harsh to realize that so much of modern life is about wasting our lives, energy and time. Consider that for a bit.
Monday, September 24th, 2007
And, of course, let us never forget all the fine nurses with sniffles and the other staff members that *must* attend work so they can take their sick days for more important things like hangovers and pretty fall days. Always an interesting emotion when the nurse assigned to you talks like the old woman at the end of the casino slots and sniffles the entire session because her cold pill is not quite making it.
Considering all the many places a person can get sick I feel fortunate not to be dying of several viral issues quite honestly. And I did not even begin to speak of workplaces and schools and malls and.. well.. you get the idea. I mention all this only because if you start to think about it you quickly realize that trying to avoid illness in the way that we currently do is not really working. Anti-bacterial hand wash and killer wipes are not going to protect you for long. They might destroy the worst offenders on the spot but in real life these viral and bacterial intruders are all around us.
Speaking as a sick person that is well aware that "Mother Nature" has a killer virus with my name on it, I have been considering my options in this regard. If I ever decide to get a kidney transplant then I will have to fight this same battle not only with my banged up immune system but also with some very strong drugs trying to turn *off* my immune system. That's how any organ transplant works really. The doctors have to make your body a little less "paranoid" about "non-self" cells. Alas, that also means that a good cold can drop you dead. Let that one soak in for a moment.
Backing up a little I think it also becomes clear that my chiropractor has the right idea. His practice is all about helping the human body to stay at a peak level of wellness so that it can fight off all the intruders on it's own. Healthy living and good food is all about this too. Real health is a state of being that we often forget in this crazy world of pills and shots and creams. Or, in my case, it is a state of being that is no more and will never be again due to a genetic failure. Normally in nature I would be dead and as little as 30 years ago even in a hospital I would be dead. Dialysis is a very new process indeed. Literally in my lifetime.
So? Why am I prattling about all of this? I am writing about it because considering the price to be paid for making bad choices, I am constantly amazed at the number of people that make them. Perfectly healthy people that drink and party and smoke and eat horrid things my dog will not even lick. I guess this falls under the category of things you don't value until they slip away. Even worse I think is that the AMA has tricked us into thinking that simply getting older is reason enough for all these things to fade. I think that is so untrue. If people took better care of mind and body they would be rewarded with many happy years of healthy life. People like me are just out of luck. DNA gets you no matter what, but at least my days in the beginning were happy and healthy.
Ironically one source of negating the body comes from the religious community. They believe that only the soul matters and that the body is dirty and good riddance. I find them often the worst in that area thinking they ca get by with anything. Also ironic is that the bible is a great book for healthy diet info. Those old goat herders lived pretty well. Plain but well.
Perhaps some day all the world will eat and drink and behave in a sane and rational way and all this crazy medicine will only be needed for a special few. Now that would be a happy world indeed. Strange the things a fever from a summer cold will make you think about, eh?
Wednesday, September 12th, 2007
But in general everyone seemed out of control in some way. Some people simply would not shut up. Others would stare into space and try to fade away somehow. Still others were just a bit too aggressive about life in general. And a few more needed more attention than normal. And for these people that is saying quite a lot. Can you say; "needy little children"?
Personally I tried to keep my mouth shut and remain out of harms way. Tricky but overall I managed pretty well. Still... for the first time in my life I actually considered killing some people. Were it not for the terrible waste served as prison food there would be 3 less persons in the world tonight. Some people simply will not shut up... ever! And they really need to do so because nothing they are saying is worth the air or time. These types just spew out their petty little thoughts into the world and hope nobody takes offence to the degree that gets them killed. If they only knew how close the "killer" was today...
Ironically I am not normally a violent person but anymore I think violence is under-rated and certainly misunderstood. Nature uses violence all the time and it works well. I can imagine the world being a better place if a bit more violence was handed out more often and in the right way. Humans have drifted away from violence in our society as a properly used tool. Now we just have the criminals using it and poorly at that. I blame religion but you knew I was going to say that right? Truly though religion of all types invert the natural order of things and often do great damage because of it.
People need to get more in tune with nature in a rational way. I am not speaking about hugging a lovable tree for three hours. I am speaking about respecting nature and working along with it and being part of the whole once more. We can still have our technology but we just have to think a bit before we use it all the time. Technology is a product of the human mind and there is nothing wrong with that at all. We just need to be careful with such great power. Responsibility is the word for the day on this one.
This starkly contrasts the idiotic things coming out of the mouths of three women today. I won't repeat all the stupidity here but let's just say in total these women had nothing of benefit to say that would matter in the grand scheme. Half baked notions and endless emotional whining about pretty much everything. And that total responsibility dump, of course, in the name of their deity. One must never be expected to *do* something about all the whining! That is the purvey of gods, demons, and saviors, oh my!
So yes... it was a weird day with so many strange behaviors and so many insane comments. I was so glad to be home again where the people are rational and think about their actions before doing or speaking. Imagine my annoyance too when I logged onto the web and found that people I know far and wide also were spewing insanity today!?!? Is it in the water? Perhaps the air?
I am thinking about becoming a hermit for sure. Hard to find a safe place to think and express anymore. And ironically if I was to express my thoughts or even factual comments on things today I would have been shot down immediately because nobody ever wants to hear a rational comment or logical idea when they are running amok in their own fantasy worlds.
I can only hope tomorrow is a better day, but I am not holding my breath. Want to know my fantasy? My fantasy is to find a place in the world where religion is a joke and reasonable thinking is the norm. Where science trumps faith as a normal happening. Where people that live in a fantasy world get the proper medications and lots of love from family and friends but are never allowed to vote, breed or travel unattended until they are certified better. Indeed... that is my fantasy. Perhaps when they colonize the moon? Hmmm.
Friday, September 7th, 2007
I have also been getting outside a bit more and working on my plants in my container garden. All of the heat this summer has been truly intense and almost killed my plants on many occasions. I have gotten some produce but nothing like I should have gotten. I am reading up right now on hydroponics in an effort to have a better garden next year with less soil and less work. I am also considering building or buying a small green house to help with protecting the plants.
As subtle as it is, this idea of a project that will happen next year is new for me since I was ill. I have been very loathe to make any plans that reached out more than a week or a month. I used to make plans for many years ahead but then my kidneys quit and my world changed so dramatically. It is very hard to make plans for the future when you can feel internally that you have no future at all. PKD is a killer and in a way it has already done it's job on me. If I was living even a single generation ago I would most likely be dead already or wishing I was. Kidney replacement technology has moved rather slow and has only been around for about 30 years overall. So making plans for next year is a big deal for a guy that nature says is dead already.
Once upon a time I was into survival as a study. I easily could have been one of those guys running around after the world crashed in on itself. I was ready for the collapse of civilization and kind of hoping it would be sooner rather than later. Suddenly a couple of years ago I found myself in a place where I was totally dependent on modern technology. Survival in a place without electricity or running water was no longer an option for me. Same deal for the medications I take each day. In truth I would only last a week or so before I was too sick to function.
Once that happens to you, a person has to look around and realize how dependent we all are on modern technology. Sure there is some of it we could easily do with less of, like cell phones in cars, but overall as a people we are very much linked to our toys. Life would get very ugly in a hurry if we lost all of it for even a week... much less forever. Having realized that situation I find that I am much more in favor of solving issues and problems in our world than hoping it will just blow up or die off. Perhaps that is the change of maturity as well? Hard to say. I do know that I am more in favor of fixing the world now than of letting it degrade. Alas, having said that I also can see why our young people are so upset. This society is a mess and needs some real guidance instead of all the talking heads we get from Washington. Time to get out and vote people.. and make it good because the "status quo" is not going to save us.
Perhaps if more people woke up one day and realized the reality of their lives then more people would take actions to make the world a better place. I know that my disease has been a serious wake-up call regarding what is real and what is just invented fantasy. Ironically life would be better for millions of people if they all had a terminal illness for a month. I know that is a pipe dream but gosh the attitudes that would shift. Goodness.
I guess what I am really complaining about is the almost constant state of illusion most people live in around here. Perhaps it is just Tennessee? I doubt that though. People just seem to want to live in this pretend realm of their own creation. I think there is nothing more dangerous in life. Standard religion creates a mess of things but there are other groups that are just as bad when it comes to "making it up as you go". It just floors me that people cannot look around and see the reality of their lives. Clearly they have to be trying not to see in order to keep going in that happy illusion. I know that I no longer have that luxury and personally I find reality to be better because at least it is predictable and constant. Beats a "vengeful god" any day if you ask me.
Monday, August 6th, 2007
My daughter Amanda turned 19 on August 2nd and we all went for some Thai food since that is her favorite. I have to admit I love it too and generally do pretty well with it. Gotta watch those spices however as they can be intense if you order the food too hot. Still I love spicy foods and I even love to grow the peppers myself. Check out my gallery for some pictures. I was in pretty good shape over the weekend and was able to drive for a time. I get pretty stiff and tired after a while but it was still fun to drive around the town. A feeling of independence once more. I get pretty sick of riding the bus and having others shuttle me about.
On Sunday (yesterday) I was able to gather myself and my dog and I took a walk around the block. This was the first time in almost 2 years that I have been able to do that much walking. It was also really hot at about 80 plus degrees and the humidity was about 70% as well. I was totally soaked when I returned but I was very happy at my achievement. I am trying so hard to get back some of my physical abilities and perhaps in time I can even return to doing woodworking. I would really like that because I think a person must have some purpose in life that matters to them or there is no reason to get out of bed in the morning.
Even worse if you have no purpose that is meaningful to you then your life is a pointless existence and it will not be long before you end it. Doing dialysis is a hard way to live and it takes a lot of effort to stay alive really. Most people are here and that seems like a given to them but honestly life is more a precious commodity that one must protect at all times. Trust me on this one... if you don't protect it then nature will take it away and give your resources to somebody else. This is a universal law of life on this planet. It cannot be broken or bent at all. Beware!
However, if you try just a little then nature will smile on you and let you play for another day. I wish more people understood this simple rule. I find that all the churches in the western world have inverted this simple theme and it is no wonder most of their members are so depressed and bummed out all the time. Oh they put on a good show for the public but you get to know some of them and you will find out that most are so afraid and worried and stressed and all the rest. I think the world was a better place when the non-Christians were in charge. Check your history and see if you don't agree with me.
So I took a walk and I intend to take many more. That plan may fall apart on me but at least I have a plan. Today, of course, I shall have to spend most of the day at the clinic but tomorrow I will feel better again and get out there once more. My testosterone shots are helping too. They replace some of the energy lost by taking Sensipar. If I am really lucky I might even get back to a "normal" level someday. I have to admit it is amazing all the things that your kidneys do for you and manage in the healthy body. You don't really know until they are gone. It is a longer list than you might imagine. I cannot imagine how hard it must be for the people that have a heart attack of something like that. Kidneys are not what you call "first tier" organs and I cannot deal with most of the loss. Losing an important organ must be a disaster!
So I continue to plug along and hope things get better. I would love some day to direct the readers of this blog to a new section of wood products. I think that would be really neat. On that day I will know that I have recovered most of my life. Not that it was amazing in the first place but there were parts I did enjoy. Kidney failure and I imagine most major ailments are all about building a new life instead of recovering the old one. I am not sure if that can ever truly happen once it is gone. Most times I think I would be plenty happy just to make a new one.
Tuesday, July 31st, 2007
I tried to connect with a friend and perhaps go to the park or mall and have fun taking some pictures with my new camera but that did not work out due to a timing conflict. Oh well, I still had fun driving about the city and trying some of the minor roads that I rarely get to travel. I was really trying to get near the river but found that I was not really able to get a good space. Most of the good spots seem to have houses or businesses already there. No doubt in my mind that humans love the water and build near it as often as possible.
I had a delightful breakfast today at the local Waffle House. It is an amazing place to eat and watch people. There is something about that place that just seems to draw together the best of America. While I am still belching the greasy food I find that my mind is warm and happy with the spirit if middle America that lives there. People are just friendly in the Waffle House. It is where the working class go to eat and to speak and to be part of a community. And I think if more people went there we as a nation would better understand the spirit of capitalism that makes this country great. America is not in Washington D.C. it is in the small middle American towns all over the country.
Real people have real issues and real solutions. I think the politicians should go the the Waffle House and sit there for a week. Antacid in hand they could learn what really matters to real people. Ironically if other people in other countries could see us there at breakfast, lunch and dinner they too would come to know that much of what this country does abroad is not the will of the people.
So if you have the chance you should go visit and see for yourself. Enjoy the food and watch the people. It is a grand experience available no where else.
Thursday, July 26th, 2007
Basically it is a program that re-trains you or lets you get back into a work situation without losing your benefits (small as they are) while you get going again. Because naturally once you start working again you are going to get a visit from the disability police and they are going to take away your benefits. On one hand it is a great deal if you want to get back into the work force and need a way to get started. I would be the first to admit that trying to re-train and trying to work around an illness is tough at best.
My complaint is that after all the hassle to even get the SSI in the first place now they want to tease me back into the working world with the promise of help while I get started. How rude!! They act like all this kidney failure stuff was just a mistake on my part and I really did not want to stop working and being productive did I? Surely it was all just an error and an inconvenience? Gosh... how nice of them to promise not to rip away my little bit of money until I am up and working again.
It just galls me. I never wanted any of this kidney failure stuff, but now that I have it I am trying to make the best of it. And all the government seems to concern over is how best to get me off the list and back into the tax base. I think the government should be looking into fraud and over-spending before they try to reduce costs by getting disabled people back to work. There is so much waste in this system that it is really quite hard to speak about it all because my fingers would drop off before I was done typing.
I see it all the time. There are companies making millions on providing services for the poor and the disabled. You should see the bills I get. Medical care, drugs, housing, transportation. It is amazing. These companies get to charge almost anything and the government just pays it all with no questions. Once you are into the system you are a gold mine to the people that provide services for you. I never see much of it but the providers rake it in big time.
It is very clear to me that if the government provided the cash to me and I was required to purchase services and I could shop around that I would do much better and get some real deals. Competition is the only way for this system to work and there is almost none. Our society needs a good dose of capitalism worse than ever right now. As an inside observer I can tell you it is the only way to make this monster behave. All this talk of socialism like Canada does for health care is a bomb waiting to explode. It is close to it now and as a person in the system I can tell you it is not good.
We need to do for medical care what we do for cars and toasters. They should be an open market and no rules. You should be able to decide if you are getting good care or not. And you should pay for it. If people are poor like me then the government can send me a check and let me decide how to spend it. And I know some people will spend it wrong... cool... then they will die and problem solved. That leaves more for the people like me that do the right things.
Sometimes I wonder... what would have happened in my life if I had been able to get access to some of the money that I get now? Let's say I was 21 and got $10,000 in cash so that I could start a business. And I assure you that amount is nothing compared to what I am getting now for medical costs. Imagine how different my life or even yours would have been. Why do we wait until the need is so great and the return on investment so small? I see the money go by and I see the taxpayers that struggle. I also see that nothing productive comes from paying for the ill. That should have been up to them in the first place. But without a way to get into business at an early age there is no way to earn enough to pay for the "golden years".
Our society is backwards in so many things. We really should take a look at that. I know I have and I do not like what I see. 200 years is not that long and at this rate I do not think America has another 200. We need to consider if we want to be here in the future and take some steps now to get there. Questions to ponder as we approach yet another election.
Wednesday, July 25th, 2007
I went to the mall last night and I was intending on going in and taking pictures but I just sat there in the car while the rain poured down. I wanted to try out my new camera equipment and have something for this site and blog. I guess I was just bummed out. I just sat there. Eventually I grew weary and returned home. Depression comes in some weird forms.
Dr. Rivers came by today in place of our normal doctor. She reduced my time and upped my Sensipar. I hate that stuff. It is $500 per month to buy, it makes you want to puke when you take it, and it kills my testosterone so that I have to take shots just to remember that I am male. Not a fun drug. I need it for other issues, but it sure shows that the drug companies don't care if the "cash cow" is aware or happy. The side effects on most drugs are almost as bad as the primary issue you take them for in the first place. I will enjoy any number of minutes less in that chair but I have to say that 15 minutes is not that big of deal when I am there for 4.5 hours in the first place. I was kinda hoping for 30 minutes if things are going to change.
I write a lot about my dialysis. Sometimes that bothers me, but in truth it is a big part of my life. It takes up 3 solid days each week and affects much of the rest. The kidney failure itself was the real killer. It has taken away so much energy and so many other functions. Rather a tough way to live. In truth I spend a lot of time and energy as well as money to stay on this earth. I often am jealous of the many well people that just coast along and don't think about it all. Then again... I was like that and almost killed myself with denial that anything was amiss. Perhaps having to struggle for life is a better way after all. I suspect a person values it all more.
Maybe that is why movie stars all seem to be having so much trouble staying sober? Maybe life is too easy and they forget why they are here? I don't know. If I ever become rich and famous I will tell you. I have found that one has to live through something in order to even begin to understand it. That even goes for me. I only understand my own deal, not the troubles of others. I think it would be good to remember that next time you go to tell someone that you understand. Do you? Or do you just think you do? Be careful.
One last note today: Check the main page for the link to my new picture gallery. I am slowly putting up pictures as I take them. I am trying to take interesting pictures. If you have something really cool send it to me and I will post it with your name. Or I can also do a link too. I like pictures and that is the reason it is being built. Call it silly but I just like it.
Perhaps a final, final thought: What is the purpose of life? I know.. it is a rather large question for the end of a blog entry. But seriously... why are you here? Why do you go through all the effort to stay alive and healthy and well fed. Why do you work so hard all the time for things? I have been thinking about this question of late and I think next time I will try to outline some things. Until then I would be interested to hear the thoughts of others.
Sunday, July 22nd, 2007
I was quite a lesson however as I was so very tired all day Wednesday and Thursday. I tried to drink as little as I could manage and to eat light but even so I was not clean and I could feel it. Clearly I am never going to do well going to clinic for less time. Sometimes when my blood tests come out well I think about going to 4 hours but I can see now that I would be ill advised to do so. Better to just deal with the time and feel good than to push a point. In fact... if I could figure out a way to stand it I would honestly try to do 5 hours just to feel better.
Ironically, and most people do not know this fact, a HemoDialysis machine is only about 15% effective on a very good day. Most people think that dialysis is a 100% cleanup process for those of us with crappy kidneys but it is not at all. 15%... think about that for a moment. I know I was startled when I learned that number.
In fact it was part of the reason I started to investigate getting a transplant. And I was well into the process and getting all manner of tests. Eventually I realized after going to several meetings that I was not ready for the whole "dump your immune system into the trash can" situation but I sure thought about it long and hard. In truth the entire process is all about the money and it adds up fast. The price tag for a new kidney is around half a million dollars. Of course I don't ever see any of that and in fact 3 years after I get the new kidney I get cut off totally. No more help, no more bills paid, no more drugs paid. Zero! And the drugs go on as long as the kidney lasts. I simply could not figure out how to afford it all.
I think it is why so many people lose their new parts so soon but that is only my suspicion. I might be wrong. Maybe they do fine and go back to work forever but I cannot find anyone that I can speak to that really knows. Lots of guessing and old stories so far. Either way I decided I just did not want to go down that road right now. I might regret it later on but it still seems right even now. We shall see.
On a different note I got my new (old) camera from eBay yesterday. It is another Sony Mavica FD-90 like the one I have but I also got some add-ons that I wanted and the auction was just cheaper this way. So now I have 2 entire camera units. No breakage for me, eh? I just wanted to get some backup on things before they really go obsolete. Once that happens you cannot buy any new parts ever. And I like this old camera. It is not worth much now but I like the way it works and I like the feel. I know I can get smaller and better ones for about the same money, but it seems so wrong to discard a fine camera that is working well. Call me old fashioned. Now at least I can use floppy disks or I can use a memory stick to store pictures. That helped because I do not have a floppy drive on my computer anymore. I am hoping that I can now add some pictures of things I see to this blog. At least that is the idea. Easier pictures.
Time for my emotional moment: I am so darned lonely. It has been a growing problem that I cannot solve but I am lonely. I cannot seem to find any friends that I can connect with either here or online. People online are so far away and people here just are so hard to meet. My life is pretty much the clinic and the house. Not much chance to meet people. Oddly one has a hard time talking to people at the clinic because we are so isolated in the chairs. The machines are between us and it makes talking almost impossible. Even if you wanted to chat with the person next to you it would be difficult at best.
And most of the people there are very ill and very old. Only a few are 40 or under. Even my 44 is considered quite young. Most people there are really old and really senile. Some are not even sure where they are most of the time. These days I just watch my DVD player and hope the time passes quickly. That DVD player is the best thing I have purchased in a long time. I really enjoy it. Not even that costly... under $70 and it comes with all the cords. I wanted to get a laptop and I could eventually save that much but there is no connection at the clinic so I would be totally isolated and not online. I am not sure I could stand that. So I watch movies instead. It helps... the time passes.
But this lack of friends to do things with... now that is a bugger. Perhaps I want too much but just some people to hang with or to go places. Is it too much to ask? I don't know but I do know that there is no place for a person like me to meet them. I guess I shall have to think about that one. Send me a comment via e-mail if you think of something.
Tuesday, June 19th, 2007
I was supposed to be there at 9 a.m. so naturally I sat there until 9:30 a.m. with no food or drink in my system trying not to pass out. The test only took 10 minutes thankfully and I was released to the world with Ultrasound gel on my person and a bill for $150. We won't talk about the nurse that did the test. She was clearly a bitch and nothing will ever change that in this lifetime. We can only hope she runs afoul of something with a worse attitude than she has and life as she knows it changes badly.
On a brighter note I was able to acquire my new "shoot me in the butt" testosterone replacement. Thanks to Sandy's diligence I was able to purchase this new hormone for only $15 and I will no longer feel like a potato all day, every day. You don't miss hormones until they are gone I assure you. I also got word that I have qualified for a payment to Medicare from the Kidney Fund so I will no be losing my Medicare coverage this month as expected. I am sure my clinic will like that since they charge about $15,000 a month to Medicare. We both thank you taxpayers for your donation to the "Keep Jim Healthy" fund. If you no longer want to donate to this fund I suggest you contact your Senator and vote Libertarian too.
The highlight of my day was calling Social Security. I have reapplied for SSDI and SSI both and according to the nice bureaucrats on the phone have been turned down for SSDI and am waiting on the SSI. Oh they know the answer of course, but cannot tell me. I have to wait for the written confirmation on that one. I tried to talk with the man from Department of Human Services for Tennessee, but he was not a great help. In fact I was quickly reminded of the "Vogons" from Hitchhiker's Guide to the Galaxy. His voice tone was such that you simply knew he burned out so long ago and no longer was even human in any meaningful way. His main concern seemed to be that I not be out to kill him due to his apathy. Considering the conversation we had regarding sending in the forms or not... I would have to say he really needs a break. Clearly he was unsure of even his own name, much less what I should do with forms! How dare I ask for clarity?! There is none to be had at DHS.
It seems I spend so much of my time of late dealing with all things medical. Tuesdays and Thursdays are my days off of dialysis and I use them to do all the visits and things that one cannot do while in the chair on Monday, Wednesday and Friday. It makes for a long week sometimes and also gets me to the point where I crave to never see another doctor or nurse or needle ever again. Anything but that!
And the doctors are so amusing. They remind me of the Greek gods of old that lived high on Mount Olympus and warred amongst each other for control and power. I see that all the time with doctors. They all seem to want control and use the nurses like the Titans to do their bidding. Even more frightening is the desk personnel that collect the money and control the flow of all that paper. Now those folks really are spawn of evil. All they see is money and all you are to them is a checkbook. And they are so rude all the time just to remind you of how they fit in the world order.
People seem to think that medicine is all about healing and people, but that is not the case any longer. Now it is all about money and power. Altruism and medicine will never work. But nobody wants to try the obvious capitalism either. I see it all the time and wonder how much pain it takes to create a stable medical system. I guess the answer is: More than I see now.
I would love nothing more than to return to work and pay my own bills. It would be such a relief and I think a great way to be able to take chunks out of the people that treat me poorly. Paying the bills gives you that power and it is the first thing to be taken when you fall so very ill. I think it is the plan myself. No other way to control so many with so little effort.
When you work and earn on your own they you call the shots. That never happens in America anymore because we all bought the load of crap that the Socialists sold and are still selling. We are no longer free and if you don't know why then you are already in way deep. My only goal now is to return to productive work as soon as I can. Little else can buy back my freedom from these petty gods of medicine. I only hope that I can last long enough to make some progress before I get even more ill. Time is not on my side anymore. But I refuse to be smashed by people that cannot even face reality. Stay tuned for the drama.
I found the meeting to be most informational and the staff there was quite pleasant. I came away with a better understanding of the process and a great deal of booklets for later reference. I have often joked that if the eco-terrorists find me I am done for because I have probably killed a small forest with all the paper that I have consumed over the last 2 years. There are entire reams of paper with my records on them and reams more in all the informational stuff I am given all the time. It is truly hard to say if I have reached my body weight in paper records yet or not, but I bet it is close.
The process itself is pretty sobering to say the least. In short terms I will be getting the kidney of either a living donor or a dead donor and it will be installed in my lower abdomen. I will be taking all manner of drugs to keep my body from forcefully expelling said kidney since it is in no way mine or "self" as they like to call it. My body will see the organ as "non-self" and pitch a fit the entire time I have the organ. Eventually something will happen down the line and my body will win at which point I will be back on dialysis, or I suppose in an extreme case... dead.
Indeed it is made quite clear that a kidney transplant is not in any way a cure. It is merely another form of treatment to stave off death of the rest of my body since my kidneys have for all practical purposes died already. However to be accurate this might take many years and 50% of people with borrowed parts keep them for as much as 7 years. Some longer, some less.
It has been a hard decision to go down this path. There has been a constant but subtle pressure on me since I was first diagnosed with PKD to get a transplant. It takes time to understand it all but once you get into the system you begin to see why this is so: money! This business of kidney and organ transplants is big money and I am merely the cash cow. They try to hide it all behind some altruism and some feel good but the bottom line is that swapping out organs costs a fortune. Ironically Medicare does not pay for as much of it as you might expect. The costs are quite stiff and I do not know if I can actually afford it all.
Another irony is that I started to receive Medicare only due to being on dialysis in the first place. I am only 44 right now, not 65. Three years from getting the new kidney I will be removed from that program until I am 65 and then I get it again. I find this almost insane myself. 3 years is barely enough time to get healed and functional again. Never mind that I will have to continue to pay for all the medications I will be taking by myself. Their plan is to get you well enough to get out there and get a job and some insurance. Surely a person can find a job suitable to pay for thousands in drugs each month right? Surely those years of illness were just a minor interruption in life right? Surely you can just pop right back into the work force again with no problems at all, despite being out of work for all those years...
I suspect this is why so many people lose their kidneys about 3 years after they get them. No proof but asking around it seems clear. And, of course, just because I can pee again does not mean that I will not have PKD any longer. I will still have to deal with that issue as well. It never goes away. There will still be the pain and swelling and urination of blood.
So needless to say it was a hard decision to travel this road. Despite what the average person thinks it is far from a good deal. It is just "less bad" than the other road that ends in a dialysis chair with a weakened heart muscle. Either way I think one has to remember that nature cancelled my contract on life 2 years ago. Anything after that is just bonus time.
I only wish I could really take advantage of that bonus time. Instead I am so financially broke that I just barely exist. A sad state of affairs for the nation I love and enjoy so much. We can afford wars and broken soldiers, but hardworking regular citizens just get to die slowly. No problem.
I sometimes feel like I need to shout about all this from the rooftops. There is a serious problem in health care in America today. We all know it but are all too afraid to do what needs doing. So in the end we work all our lives only to find that when we get really ill there is no help and the society turns its back on you. And no matter how much you prepare you will find that in the end there is not enough money to make it all better because the AMA made sure their members live really well. I know my doctors are getting rich pretty fast.
Even more frightening is the drugs. The companies making the drugs for all this are the ones doing well. Even the generic forms are thousands of dollars each month. Insanity runs amuck for sure. I can honestly say that anyone who thinks capitalism is a bad idea really needs to be sick for awhile. One quickly sees how paying as you go is the only way out of this mess. It is the only way to bring down prices and stop the corruption that is Medicare and Medicaid. And I assure you that if drugs had to be bought by the average man on the street those prices would be more sensible too. No drug company could ever stay in business when nobody can afford their products.
Instead we have insurance or government that covers it all and the prices just soar. I find that most of the doctors have no idea what anything costs. Nurses either. They leave all that to the billing people. Not a good idea.
So I must admit to being scared. Almost out of my mind. The process is truly frightening and the financial aspects are almost worse. Thinking about having parts in my body that once belonged to another person is very strange. Blood transfusions were bad enough but actual parts? Wow...
I have started to reconsider issues of personal value and what is a good use of life and time? Perhaps some people might never think of such things but I do. In this situation I have to consider my own mortality each day. No choice in that when you awake each morning and the first sensation is pain. Because of my disease my life is going to be a little over half of what it might have been barring accidents. That is hard to deal with as well. So far I have not found anybody that has much useful to say on the matter. Mostly I get clichés or dogma. Neither is worth anything.
I have concluded that in many ways most people on this planet have almost no idea of what living really is or how it should happen. No wonder we have so many problems! I find that most people are living in a semi-real state trying to find an escape at all times. I believe that this has happened because of the population exploding. Human life is too cheap and far too easy to get or replace. People no longer live well because they are so busy competing for resources that nothing else ever comes to light. Most people seem to live with the philosophy that all the rewards and good stuff happens sometime *after* they die. Can you imagine? Just saying that sounds so very insane. They spend an entire life struggling, often in poverty, trying to get ahead but really believing that all the things they wanted will be denied until after this painful life is over.
With ideas like that it seems easy to abuse and use people. Who among them would ever object or complain? If they get to the end of life and their bodies are bent and broken it is of no matter... they think all will be fixed in the afterlife. I think I see where the flaws in medical care happened, don't you?
I have a lot to think about with the choices I have made today. And I am sure there will be more to come and days when I wonder why I thought being a live cash cow was better than being a dead human. I guess the truth is that I love life as much or more than anyone else. I just wish I did not have to share such a wondrous thing with so many people that seem to want death and the afterlife more than this life. If heaven is so great... why delay in getting there? I know my life would be much easier if several thousand people decided to go see god tomorrow. Gosh... imagine all the resources and space left for the rest of us if they did so.
Now that is a happy thought. I think I will suggest it too all the faith based people I meet in the next month. Maybe if we thin the herd a bit then life will mean something again and all my efforts to stay alive will be rewarded with more than being just another object. How about you? Do you value life... yours or any other? Write to me and let me know. I would be delighted to find other people that valued life.
Truly I would.
My life is hard enough without having to deal with missing drugs. What good is a doctor's visit and a prescription if you cannot afford to fill it? Even worse is that I still have to pay the $88.40 each month to Humana so that I can still get my generic medicines including my pain patches. I cannot imagine how awful I would feel if I had to do without those too. But if this situation of no money continues I am going to be in trouble. Pain and depression equals quitting.
I am tired of the medical professions. They are so out of touch and so conceited regarding their own importance and power. I really do hate them anymore. I sometimes have fantasies of doing to them what they do to me. And, of course, in those fantasies I laugh the entire time. I found out yesterday that one of the tests coming up for my transplant process is to check my bladder function. This starts with sticking a plastic tube up my penis and then pumping in a solution while they x-ray my bladder. All this to be sure it still works since I urinate so little. Honestly... if this has to happen I am so done with this process. I have been demeaned and abused quite enough. I draw the line at plastic tubes up my privates!
The doctors and nurses think nothing at all of the things they do. It is all just procedures on an object to them. I think they would be more concerned if they had to try it out first. As it is they try to tell me how I am going to feel before they hurt me so they can feel better I guess. As far as I recall I have never felt any better because some moron said, "This won't hurt much, okay?". It still hurts just as much. Does that ever work to tell someone what to feel? I didn't think so.
Anyhow... I think I will find a corner to cry in now. It is really not good to have a low testosterone level. I am not myself at all.
Sunday, June 10th, 2007
I have been and am continuing to do tests for the upcoming transplant. Yes, I broke down and decided to get the workup for said transplant process. I am still not sure if I want to go down that path but I think I need to investigate it and see what it is all about. Good and bad I need to know. I don't have many options so I have to be careful with my decisions. I have made so many bad decisions in life that I am to a point where any more might literally kill me. In this case I only have a few options left so it is really about selecting the one that gives me the best quality of life. Transplant is not a cure but it does have some advantages over spending so many days in the clinic.
The rest of my life is pretty much a mess. Where to begin? Mostly with money. I cannot work due to my condition so I have no income. However, I also do not seem to qualify for the government programs that are available because I have not worked that much over the last 10 years. It is easy to see now because I have great hindsight to work with and I can see how my illness was limiting my life and work efforts. I also allowed Sandy to work more outside the home while I cared for Amanda. We decided a long time ago to home school her and that worked out well. But it also required someone to stay home with her. I was the logical choice because Sandy was doing so very well in corporate America. Alas, that left me with a lot of zeros on my Social Security listing. Who knew that was going to bite me in the ass years later when my kidneys went south?
So right now I am struggling to find the cash to pay my Medicare and Humana premiums just to keep going with the basic dialysis treatments. That does not even begin to help with the coverage gap for Humana and the approx. $2000 per month in pills I suddenly have to pay for because I used up my allotment on Part D that fast. Yeah.. that sucks. I have no idea how I am supposed to resolve this dilemma. Ironically neither does anyone else. They all seem content to shrug and say "I don't know". Pity they are doctors, nurses and social workers. Don't even get me started on Social Workers. They are so very useless in my world right now. Lots of talk and no action.
So I went back to Social Security and applied again for SSI hoping to get a better response this time. We shall see. I don't hold much hope for it all. Too many rules and nobody really looking at the facts. Ironically the woman at Social Security actually suggested I contact DHS to see if they would help me with my premiums and perhaps give me some food stamps to while I was at it. You remember DHS? They laughed at me in the first week after I got out of the hospital a couple of years ago and then messed with me for a day while they turned down my appeal. Great...
So I go to dialysis 3 days a week on the bus. It takes all day and the bus bounces my poor swollen kidneys to death. If they were not already broken I am sure that would finish the task. As it is it just hurts a lot. On my off days I hang out at home trying to recuperate from the other 3 days and figure out how to do something productive.
My original idea was to try and return to my programming or my wood working. Right now I think woodworking might be the better idea but I have not a clue how to afford it all or how to even manage to have the energy. So many of my medications drag me down so badly. Sometimes even driving is a risk because I get so tired so suddenly. I cannot imagine power tools. I will have to be very careful with that one.
Oh, I forgot to mention that the Androgel testosterone replacement gel works pretty well. I was feeling stronger and more positive of mind. However it is $200 plus a month and Humana won't cover that either. So I am feeling pretty depressed again as my testosterone levels drop even further. No telling what that is doing to me.
I think the moral to the story is if you have kidney issues you need to sell everything and move into a small apartment before you crash. Then when you finally do need help the state can look at you and see a desperate and totally broke person. That is the only type of people they seem to help anymore. Anyone else will get to what their spouse or roommate sucked dry and stressed before they lose that relationship as well. This country has a real problem with health care and I think most people are stupid for thinking there is going to be any help if they get sick. Anymore getting sick in America means dying slowly while the medical folks suck you dry for all the cash they can get before you expire.
So if you read this and have any suggestions or ideas or just want to send money please feel free to write to me at Jim@JimCales.com . In truth I could really use the ideas. Because right now my life is looking pretty bleak. I had no idea that at the age of 44 my life would be such a mess and I would so badly regret going to the hospital that day 2 years ago. Man, what a mistake that was in general. Dying would have been so much easier and so much less pain and emotional anguish. And if one more person tells me to have faith... I swear there is going to be a mess to clean up. Damn... I hate that phrase. It is the worst manner of reality evasion.
Thursday, May 10th, 2007
I have been rather sick of late with what appears to be an annoying cold. Thankfully Benedryl is cheap and works well. Even so I am tired and run down. Truly I am just making it through the week as best as I can. Just one more day of dialysis and I will be free to rest all weekend. Having a TV in the bedroom is really nice. One can zone out flat on your back. How delightful!
Thursday, April 19th, 2007
I have been dealing with some serious back strain this last week. I have no idea what I did but my back muscles are screaming at me anytime I sit and then try to stand again. Makes it really hard to get around for sure. I walk most of the time with my big walking stick. Ironically that seems to scare people more than you might expect. I guess people expect a small cane rather than a large stick. Truth is I am a tall person and a bigger stick just works better. Honestly I think people are just afraid of their own shadow anymore. I am about the least dangerous person most people ever meet.
Dialysis and the clinic are good. Things there are about the same as always. I go, do my time and go home. Something of a non-event. I have been trying to make some new friends here in Knoxville and to that end I have been going and doing some things with said friends on my off days. It is not easy since I have to watch my energy levels and make sure I don't get into situations where I have to walk a lot, but overall it has been fun to get out of the house a bit. My biggest issue is trying to pretend I am a normal person while I deal with the side effects of my pills. Sensipar is a real problem as I feel sick to my stomach one minute and have hot flashes the next. Can you say "layered clothing"?
Once the weather settles down I intend to make some small planting beds and plant some of my seedlings. They are doing well although it has been a real challenge to keep them from getting frosted. The weather in this area is tricky this time of year. High 70's one moment and freezing overnight the next. Good luck on guessing which it will be tomorrow. Even so I do love spring. All that fresh green is hard to beat.
Thursday, March 22nd, 2007
History update: Sandy got her SUV back. Indeed it was an error on the part of the bank. The vehicle was released and the account set right. However, the bank was less than kind about it all. In fact they tried to charge us for the fees incurred by their mistake. We had our lawyer call and things were set right but I was really looking forward to suing the bank. They were so rude and tried so hard to cover the mistake with even more lies. As you can imagine there was no apology at all. Toads! Is it any wonder people hate money lenders? They do it to themselves. They have absolute power and they abuse it with no concerns. I can only hope a hacker steals their ID some day and wipes them away for a month. They would learn a lot.
This week has been all about Humana and my Medicare Part D coverage. Sure enough... they raised my rates at the beginning of the year and cut my coverage. Suddenly I cannot afford the medications that I need to have. Dialysis patients tend to use a lot of name brand medications that have no generic replacement. I suspect Humana knows that and fully intended to reduce their costs by dumping people that use expensive drugs. Not like I have any options here. If I don't take these things then I will get sick and die in short order.
I guess it is just so amazing that after tricking the American public into making all the Medicare people sign up for this program and forcing them to make payments while the drug companies rake in full payment from the taxpayers that now they want even more profits by cutting the expensive people. Unreal! How much is enough? I guess that amount is more than what they now have and more than what they are taking in each month. I guess I need to add insurance companies and drug companies to banks on my list of slime. This really makes me long for a world where capitalistic philosophy was regarded more than the strange mix now in place.
I guess I don't understand why our nation spends billions on Iraq and a war that is so pointless while our own people need help right here. I am not in favor of giving away tax dollars to people that did not earn them, but if you are going to do it at least give it to people in your own country. Dollars sent to Iraq are gone forever. And meanwhile Americans are slipping through the cracks. If you doubt this... come spend a few days at my clinic speaking to the patients. It is a sad state of affairs that we ignore our own so badly.
In truth it is all very scary and totally over-whelming. All I really want to do is go back to work and forget all this foolish going to the clinic 3 days a week. It would be so nice to wake up in the morning and not think about the pain or the problems anymore. I am not old enough to have to be worrying over such things. It is just not right.
However, I also accept that things have changed and my life will never be the same again. I wish it was not so but it is so. Sometimes it sucks to be an Objectivist. And it really sucks being an Objectivist in this weird altruistic society we have now. I really don't know how to act or what to do anymore. Everything I think is right seems to just make things worse. It is like the world has lost it's mind. It is also like the society has reverted to the jungle laws. I see people acting in ways that seem more functional in a Mad Max movie where the laws have fallen apart and the world is based on every man for himself.
Whatever happened to equal laws for all men? Hell.. whatever happened to people just being nice to each other? I don't know. It seems impossible that things have gotten this bad this fast but I have to assume that it is so. It does not bode well for the world. We shall see. I predict more violence and destruction, but I really hope I am wrong. Just this once I would like to be wrong.
Monday, March 12th, 2007
Speaking of money... things here are getting a bit problematic. This last Saturday morning I was met at the door by a man telling me he was here to repossess our vehicle. This was quite a shock since we are current on our payments. However that was little concern to him and in short order our SUV was gone. Talk about your day going downhill. Naturally it was a huge mistake on the behalf of the bank. At this point we still do not have our vehicle back but I have no doubt that a few calls from our attorney will help the bank to see the error of its ways. All things considered it has been a very upsetting situation since we only had one vehicle. Thank goodness for the help of friends. This is the part where I say again how much I loathe money-lenders. If only they were as perfect as they think they are...
It has been a similar situation regarding my other financial matters. Things are getting tight and I think the only way out is to get divorced. Sad to say our government will not assist me in any other way. I must be a single person and I must be totally broke in order to get any help at all. It is either that or I am on my own trying to pay for all this. Truly a sad state of affairs in a country that speaks so often about helping people.
Overall my health has been pretty good of late. Things have been calm and normal in that area. It has been nice to have some warmer days. Spring is a wonderful time. Sandy and I planted some seeds yesterday and we will have some containers on the deck. Nothing big but enough to provide some fresh herbs and a few veggies. I wish I had the energy to dig some beds. That would be fun. If it was up to me I would dig up the entire yard! Call me over zealous.
Anyhow, one presses on and hopes that things get better. Hopefully I can get some help and things will get better. If not I might have to resort to selling pencils on the street corner.
Tuesday, February 27th, 2007
Dialysis is going well of late. My only complaint is the Knoxville CAC bus service. My goodness what a confused bunch of people they are of late. They pick me up early and take me home late. It makes for a very long day and a lot of physical bouncing on my poor kidneys. Those buses ride like a sickly yak most days. Goodness I hope they get some new vehicles soon. Those old ones are a disaster. The actual process of dialysis is going very well. I have been a little tired but mostly doing really well and feeling good.
I am hoping that once the weather gets warmer I can do some things in the shop. My feet have been very sore of late but I think if I get a tall chair going I can do some things. Most times working in the shop is a stationary deal. I think with some good planning I can manage to do some things again. I will never be as able as I was before but maybe I can regain some sense of normal. I would love to build some boxes and make some bowls again. It has been forever it seems.
All my numbers are in the correct range according to my doctors. Basically I am as good as I am going to get. I might improve more if I go for the kidney transplant but that now seems the only way to get anymore health improvement. I guess in truth it is all better than being dead. I just want to have some quality of life if I am going to be here longer. No point to existing if all I do is watch TV and go to dialysis. Might be enough for some people but not for me. I want to at least be somewhat productive again. Part of that objectivist thing you know.
Speaking of objectivism... if you go to Google videos you can find quite a few videos of Ayn Rand. She was quite a force in her time. I love to watch her do her thing. It is also fun to watch all the liberal people around her try to get her to see things their way. Not happening! Lots of fun.
Tuesday, February 20th, 2007
On the bright side: My overall numbers are good. So good in fact my doctor is prompting me to get going on the transplant process while I am in such good shape. I have to do a whole series of tests to make sure I can withstand the process. Just like dialysis being transplanted is just another treatment designed to keep me alive for a bit longer. Sometimes it lasts many years, sometimes it never even starts up. Generally transplants work these days but it is not a sure bet. There are also all the drugs and the side effects involved. Much like dialysis one has to really keep on top of things to make it all work. Personally I want the good effects but like all humans I fear the possible negative aspects. Choices are always tricky.
A few days ago I was in a bad place emotionally and quite honestly I totally broke down and cried for awhile. Sometimes this entire situation just gets to be too much to handle. There are many aspects that most people have no clue about and it gets to be too much. Most days I do okay but on occasion it all piles up. I think once a person goes through this type of life change (crisis?) it changes you forever. Most average people seem to not have any idea about it all and I think that is the real issue.
In our society most normal folks have no clue about being ill and in many cases they don't want to know. I realize I was in serious denial regarding my kidney issues, but I am totally amazed at how people can act like there is nothing wrong in the world and then they just push away anything that might incline them to look at it or deal with it. I have actually had people tell me point blank that they did not want to talk to me about my situation because it makes them "feel bad". However they seem to have no trouble launching into a long conversation about all of their issues and "problems". As if any problem they might have is really anything more than the results of bad decisions they made. Amazing... how I am supposed to care about the trivia of their days when I am struggling to deal with my own life spiraling down?
I realize people have problems and some of them are serious but asking a dying man to care about trivial issues in your life is a real non-starter I assure you. It just makes them look so ignorant. Life is all about passion and purpose. To live like a drone in a life that has no real purpose and then to pretend that you really are getting somewhere is just sad. I see so many people that need to wake up and take stock of where they are in life. In truth most people are simply miserable and tired on top of that. They spend all their time trying to escape for a few minutes because they truly hate their lives. Some even manage to escape for an entire weekend but they generally hate themselves all the more once they come back to the real world.
On that note I have seen a bunch of programs of late that allow a person to create an avatar and then pretend to be anything they want while they "play" and chat with other people hoping to escape. Personally I think this leads to a society that hates themselves and hides in small rooms as they live in a virtual world of their own creation. Sounds like a bad sci-fi movie but at the rate we are going I think we might get there. I personally prefer Skype because at least it allows people to see the real person on the other end. Call me old fashioned, but it is how I am. I like to speak with real people and I like to live real life. Pretending to be something I am not in a virtual world is not my thing. Kinda makes me sad because I was hoping to do some cool programming. I think I need to head a different way. I sure don't want to be a part of that world. No thanks!
I guess it all just makes me a bit crazy. I think people should live well and pursue their dreams. And when they see a person like me they need to redouble their efforts to not be a drone and not live in a miserable life they want to get out of so badly. I know I struggled to be more than I was but I was always held back by a world of people trying to never change. The people in charge love to stay that way and all these people living like pathetic drones just makes it easier for them.
Just once I would like to see people heed my advice and live like it all meant something. There is a great quote from the HBO series "Six Feet Under". Why do people have to die? The answer is: To make life important. I don't think anyone could say it better than that. I guess the only question now is when are we as humans going to live in a manner that makes life important? Soon I hope.
February 1st, 2007
I can say for a fact I am tired and bored to tears. Tired is the dialysis process and the weather combined. Bored is the effect of having no purpose and no money. My days are pretty dull. What I would not give for something interesting to happen. Better yet would be someone interesting to talk to or do things with. I feel like my entire local society is as bored as I am. The healthy ones try to get together and party for a bit. Sometimes they shop. The rest of us generally end up in front of TV all evening long and sometimes during the day too. Bleech!
I have lived in other places where the winter is more serious and those people have more plans in the cold weather. Probably because it lasts so long that they have to do something or go insane. Here in Tennessee the winter is so sporadic that most people here just put on an extra layer of clothing for the day and hope it all goes away soon... which it generally does. A good example of this is that it showed earlier today and now it is all melted and gone. Oh sure the day is totally cold and gray but the snow never lasts.
I have been trying to work on my programming but to be honest I find myself falling asleep while reading more often than not. Hard to focus when you are so tired. I am so looking forward to warmer weather and more sunshine again. This is so gloomy. I want to learn more of the coding techniques and language quirks but it is all so hard to focus on when the weather is like this. Those programming books get so big and so heavy.. whew!
Some small spots of enjoyment of late have been some new chat programs. Skype (http://www.skype.com ) and IMVU (http://www.IMVU.com ). These two programs are great fun and make communications easy or in the case of IMVU, lots more fun . If you have time I suggest you check them out. Skype is probably my favorite because it finally brings the reality of a videophone to the masses... for free no less. Slap on a headset and you have the coolest thing since a rotary phone. It is certainly the kind of communications we were promised so many years ago. There is nothing more fun than seeing the person you are speaking with on the line.
Of course I run across a lot of people that are totally afraid to be seen on cam. Most of them are afraid to be seen in life too. Alas, the world of computers attracts a great many people that have the self image of a worm. Easy to hide in this world and that brings us to IMVU chat. It uses avatars to hide the person. No doubt this will be popular in our society of pathetic people that want to be someone else. With IMVU they can. It is fun but I fear that it will simply bury the identities of the people that wanted to hide anyway. Oh well... I guess that leaves more room for those of us that like the light of day.
I guess my mood is easy to sense today. Truth is I am pissed off. I am so tired of all the problems and issues that people around me seem to have these days. Of course I realize that I am surrounded by the worst of the worst. All the sick folks, the nurses with savior complexes and all the online people with the many problems they possess. Clearly I need to get out more, but that is easier said than done. My world has changed in many ways but the worst and most sneaky is that I am suddenly out of the mainstream of life and thrown into a subclass of people.
No longer am I part of that productive group that makes things happen and lives strong and plays hard. Now I am part of a group that I never wanted to be amongst. All those people that simply exist and suck up resources. People that for some reason have fallen down and cannot get back up into productive life. It is a hard place to be because it seems so far from the other group. And once you are in this group you play hell getting back out because nobody wants you to escape. Once you are in this subclass you become a "cashcow" for the other group and we all know how people protect their sources of cash. I often get the feeling that I am not supposed to get up nor make a fuss. I am supposed to simply sit down and be quiet. I am never to express my anger and upset at being shelved.
Meanwhile I am supposed to smile and pretend that I have some sort of faith regarding life and how it all works out. In truth I am bored, broke and really getting tired of listening to successful people tell me how much I cannot do anymore. There is always a reason why my life is over and I should be just tickled about it. I grow weary of it. And I grow weary of a society that substitues faith and stagnation for progress and rationality. I am about fed up.
Sunday, January 14th, 2007
Short entry today since not much has happened. A peaceful day. That's the way I like them.
January 13 th, 2007
It has been a little difficult adjusting to the new schedule. Having my entire weekend off is really nice but I sometimes feel a little lost. In many ways this process is a lot like having a part time job. 3 days a week I spend the entire day commuting and dealing with this process. Ironically looking at it in that way actually helps. I think one has to accept it as a task to be done or it becomes a negative experince. I see people at the clinic that feel this way and I think it hurts them physically as well as emotionally. I don't know why they feel as they do, but I know that I no longer see dialysis as a terrible burden.
In fact anymore I accept it as the thing I need to do to protect and continue this thing called "life". Ayn Rand wrote a lot about life and how valuable it was to a person. Well... to some people. To me. I find that other people don't really get it. Perhaps there is a strong lesson to be learned about the value of life when it is whisked away like mine was. For a long time I was very angry and then depressed. These days I see it as a second chance to do more of the things I failed to do on the first run.
In some ways I wish a person could almost die at 20 and then there would be a stronger sense of what you might lose if you actually were no more. I know it would have awakened my sense of value. I see so many people that simple wander in life and seem to be more interested in the potential afterlife than in this one we have. I think this is a massive waste and in many cases I see it over-shadowing the current reality.
It is really hard to care about the world around you when you think some fantastic paradise waits for you after death. Imagine how this world would benefit from humans being really engaged and concerned how things here turn out. I think it would be amazing if every person on the planet was concerned with the here and now as opposed to the hereafter. One justs dreams of such things but imagine the developments we could have if all the land and money spent on churches went into another place or project. We could put Star Trek fantasy to shame if all the people on Earth were looking for the answers to our daily issues.
Me personally... I am trying very hard to master some computer languages. My hope is that once I master them I will be better positioned to earn as a freelance programmer. In that aspect I would have to say that dialysis and sitting in a chair for almost 5 hours is a handy thing. I get some really serious reading done. Perhaps in the future when I can get a laptop I will be able to use that time to do some coding as well. Now if the clinic only had high speed access and WiFi... sure.. fat chance.
Life is an interesting journey. I wish I knew more about the process. Sometimes I feel like the older I get the less I know. Still.. people seem to share much the same desires and fears. We all have lots in common even if we don't think so. I guess in the end it all comes down to how you handled the issues that came along and how you acted in the world. Perhaps some day life will be long for us humans but right now it seems so very short. What I would not give to live a thousand years and be able to see and do more.
I must admit to a sense of anger regarding how most people see life. Only because they try so hard to impose the way they feel and think on me. So much waste. Oh well. Just my random thoughts and opinions.
January 1st, 2007
My session was smooth and I felt fantastic afterwards. I had been suspecting that the NxStage process was making me ill and I was correct. After the session I felt like a new man. Whatever the NxStage was doing to me it was clear that the Braun does not do it. I was elated! I felt better than I had in many months. I cannot wait to go back and see how I feel after the next treatment. 4.5 hours is a long time to sit in a chair with needles in your arm but if you feel better afterwards then it gets better. More worth it I guess.
The incredibile part is that doctor after doctor has handed me pills, poked me, drawn blood and taken scans yet found nothing. So they decided my gall bladder must need to come out. When in doubt, take it out. I don't think so! As of this moment I think my problem is solved. I sure hope so. If I continue to improve then I can keep my gall bladder and avoid all these doctors and pills. Damn they are a scary bunch.
I felt so good yesterday I was even able to read my massive game programming books which are guaranteed to put anyone to sleep. I was able to read and understand *and* stay awake. Please forgive me.. I am a bit giddy at having discovered the source of my strange illness. I have really suffered from this one. I was so afraid this was the beginning of a long process of "remove the possible offending organ". A nasty game where I end up dead.
So the New Year has started pretty well for me. I look forward to 2007. Life in 2006 has been a rough ride, but I made it in one piece. There were days when I doubted I would. Having PKD is a hard thing to deal with and dialysis really makes it tough. It seperates a person from the world in general, but sometimes it is still worth it. I will keep on plugging as long as there is a reason to do so and so far I still have things I would like to do. Hopefully feeling better will make it easier to achieve the goals that I have in life. Perhaps 2007 will be a better year. I hope so. I could use a smooth patch for a bit.